I have symptoms very much like Lymes (but not lymes), along with severe pitting edema that comes and goes, severe weakness that comes and goes, irregular periods, and although I have not breastfed in 4 years, i still have milk. also, my symptoms get much worse around my period. i have very very bad and very many unxeplained pains. my prolactin and test came up normal a few months ago. thyroid was low normal. this has been going on for a year. i need help. if not an Endocrinologist then who? thank you so much for your time.

Thank you. How do i find a good one? I was very limited by my previous insurance and saw some docs that were questionable. as of January, i will be able to see just about any doctor i want, but i have no idea where to start. thank you again.

I am finally getting in with an endocrinologist. My primary doc did a cortisol test in the morning and it came up as 1. She also did a 24 hour cortisol test and that came up low as well, though I don't know how low. Low enough that she is trying to get the appointment for me.

but now I am pannicking because for the last 2 days,my eyes are not working right. It is very hard to focus and I feel very sick. My eyes feel like they are wobbly and everything looks blurred or like it has a shadow. Lights are the worst and so is reading. please forgive any mistakes I have made because if I proofread I will be like car sick.

can this be by the cortisol problem? I am planning to ask my doc as soon as possible, but I feel terrible calling if it is not important, but i really hate this feelling.It is horrible. Thank you for your earlier replies and for you time again.

Hi jill,
I am glad to hear that you are going to be evaluated by an Endocrinologist. The adrenal glands (located just above your kidneys) produce hormones (one of which is a group of glucocorticoids) When these gland produce to little cortisol a disorder that results is Adddison's disease. This is not to imply that this is what you are suffering from but used as an example. Signs and symptoms of adrenal insufficiency may include hypoglycemia (low blood sugar), nausea, vomiting, fainting, fatigue, muscle weakness, etc. etc. The blurred vision and nausea may be related to episodes of low blood sugar and cortisol levels. I would suggest that you notify your physician of these new symptoms. I hope this has been somewhat helpful.
Sincerely,
Theresa Jones, RN

I saw the Endocrinologist yesterday and she said the 24 hour test came up 1.5. She did a test that required a blood test, a shot, then another blood test. I am very happy. She said all my symptoms could be explained by the low cortisol. She also said regardless of the cause, it is treatable and I will feel much better. I also most likely have diabetes insipidus(sp?). Anyway, thanks for your help. I apreciate it.

Hi jill,
I am very glad to hear that you finally have results and a diagnosis. You should start feeling better in a short amount of time. Thank you for posting an update and for using http://www.doctorslounge.comSincerely,
Theresa Jones, RN

I am very confused. I had a morning cortisol level of 1.5, then had a 24 hour test showing 1.4, and then last Monday I got the ACTH test, which showed levels of 4.5 before and 22.5 after the shot. My doc's office called and said the test results were fine.
How could the numbers have been so low to begin with, and how come I still feel so bad? I am still very weak and my muscles hurt very bad by afternoon and I feel like I am dying by nighttime.
Thank you for your time. I know you cannot dignose over the internet, so I am not looking for that, but is there any way that these results would make sense?

Sorry. I realized later that was not clear. I do not know the exact name of the test. It was something similar to ACTH stimulation, where they gave me synthetic ACTH? I am so desperate to feel better. This is torture. It has been over a year. Thank you again for your kindness.

I hope you are feeling better. I thought I would share this link with you.... food for thought. If you aren't satisified or have any answers from your physician, you may want to consider finding a new physician who will give you the answers you deserve.

Thank you for writing. I am happy to accept any and all advice. I am not exactly better yet, but I do have hope, and I am much less sick since I stopped taking all those pills my old docs were giving me. Last year I was given 6 NSAIDS, 5 muscle relaxers, 3 anti-depressants (for pain control) etc. And a ton of Lasix and hctz to deal with severe edema, likely caused by all those drugs.

Since I changed to better insurance, I got more freedom and now I have a doctor who is willing to work with me, and he is free to do what he wants. As long as I try the things he wants me to try, he will do testing for anything I ask (so long as it makes sense, of course). I am still doing my own research too of course.

I wish you luck on your journey. It took quite some time before physicians' figured out what was wrong with me. I know it is frustrating and stressful... don't give up hope and keep searching and try new avenues if you need to.

Thanks again. The only thing I am sure has not been done on that list is I have not had my heart checked. My primary did not see the need for evaluation. I disagree, because of the pitting edema and even though I am in excellent shape (except for what I have gained from lack of activity recently) short of breath with even the smallest amount of activity. My heart races and my muscles burn.

I made an appointment today for a consult with a cardio and a stress test. It will be two months from now.